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For Those Who Are Self-Diagnosed...
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Have any of you been tested for vitamin and other deficiencies? Has insurance covered it?

I'm frustrated and worried as to how, in the long run, I will be able to tell if I still have malabsorption issues.

I'm not self-diagnosed, just under-diagnosed. My doc says I definitely have a gluten intolerance which may be celiac, but we never did the biopsy or full blood work because my basic blood work was neg. Then I responded so dramatically to a test diet and then I had an elevated anti-gliadin IgA, test and a few other suspicious blood factors, but that's all.

I have been gluten-free now for four months, and I react so violently to wheat (also apparently allergic) there's NOOOO going back for a gluten challenge.

The problem is my doc is dragging his heels on referring me to a GI, and I don't think my insurance will even cover nutrient deficiency tests if I'm not diagnosed celiac or something more official-sounding than "probable gluten intolerance" or however he would have to word it.

I'm worried that a year from now I won't know whether my guts are healing, and what nutrients I am still lacking.I am taking calcium and several vitamins now and I strongly suspect I am B2 deficient, but I'm just guessing at all this.

I know a lot folks here talk about going gluten-free and never looking back, but have any of you found a way to get the nutrition tests done? Does it matter to you?

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Yes. I had symptoms, and they tested for some vitamin issues. In particular, I ended up being diagnosed (correctly, I believe) with fibromyalgia and restless leg syndrome. I don't remember everything they tested for, but b12, D, and iron were in there, and I was low on iron stores.

My husband had some of his vitamin levels checked as he's had trouble with increasing blood pressure. He was vit D deficient.

I've even had my testosterone levels tested (along with other vitamin levels), due to associated symptoms. Let me tell you it is WAY harder to get testosterone levels tested in a 22-year old female than vitamin levels.

You should ask your doctor about it. There are a number of symptoms common to anemia that would justify testing of some vitamin levels, and heck, there are just some places to live (like the pacific northwest) that justify testing vitamin D levels.

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I've even had my testosterone levels tested (along with other vitamin levels), due to associated symptoms. Let me tell you it is WAY harder to get testosterone levels tested in a 22-year old female than vitamin levels.

Okay, that gives me some perspective... maybe I just need get more assertive on him! Thanks.

Alas, I live in sunny California, also did not have anemia show in the blood tests I did have, although I did have low protein and lymphocytes, which he didn't think were a big deal.

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No issues here with insurance and vitamin checks on my end.

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You really need Vit. D, B-12, folate, iron/ferritin, potassium, zinc (and I always include magnesium because it is necessary with the D and zinc for bone formation). Also, you need a full thyroid test. The official diagnosis if you test negative for celiac is non-celiac gluten intolerance (NCGI) which is even recognized as a diagnosis by Dr. Alessio Fasano, the recognized authority in matters celiac.

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Your family doctor can order nutrient tests on his own, and it will usually be covered by insurance, even if there is no clear diagnosis. Some doctors do it routinely as part of the physical. Though, I think my doc said it best: "The result of any nutritional deficiency test is not going to change what we do, since supplementation is not nearly as good as the real thing. I am still going to advise you to eat a healthy diet with lots of vegetables."

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I had positive celaic blood work, but no endoscopy was done. I was tested for vitamin dificiencies - low in vitamin D and Magnesium. When I had my testing done, my doctor's office gave me a list of all the tests they wanted to run, along with their testing codes. They had me call my insurance company to confirm what would be covered before any testing was done, so that I'd know what I was on the hook for financially. I just called the 1-800 number and ran through the list of codes with the customer service rep - very easy. Some of the tests were pretty expensive, but luckily, most of it was covered.

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When I was diagnosed I was called asymptomatic because I did not present with any seemingly related issues at the time. BUT as time has worn on I have come to realize that indeed I have symptoms. For example, I did not put it together until after my diagnosis that my miscarriages were most likely caused by celiac. I was involved in an accident five years ago that has left me in serious chronic pain ever since. Now I am realizing that some of this pain may stem from celiac as well - especially muscular pain - and I was diagnosed with fibromyalgia which, again, is more of a symptom that I believe is celiac.

When I ate gluten before diagnosis (and during my gluten challenge which I rather enjoyed as I did not get sick!) I felt absolutely no correlation because nothing happened which has made it difficult when eating out, for example. We eat out rarely but I would be curious to know how many times I have actually been glutened in spite of being very cautious.

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Good question. My first test was the celiac panel, which came back normal. My doc then referred me to a gastroenterologist, who ran some blood and stool tests but not a full nutritional panel. The results showed that I did not have anemia (in fact, the opposite with higher levels) and did not have malabsorption issues. I do not know the names of these tests, but it sounds like you might request them?

Since I have developed other intolerances (soy, corn, nightshades) I have avoided all supplements, even probiotics, as the vegetable source is most likely corn. And I've avoided dairy for years, but am no longer taking calcium supplements. I do eat a ton of vegetables but not the three pounds of green leafy veggies a day that would provide sufficient calcium. What's a gal to do?

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I was involved in an accident five years ago that has left me in serious chronic pain ever since. Now I am realizing that some of this pain may stem from celiac as well - especially muscular pain - and I was diagnosed with fibromyalgia which, again, is more of a symptom that I believe is celiac.

When I had my bad accident many years ago, the pain didn't come from the broken bones, it came from all the muscles, tendons, connective tissue in both legs, such that I could barely walk with a walker. Diagnosed "fibromyalgia" - probably should have been diagnosed "celiac" :lol: Thank goodness for an excellent massage therapist who worked on me for years.

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Thanks for all your input... I didn't even think of calling my insurance company, I will get the codes and do that. Doh! (slaps forehead)

My iron levels were tested as part of a complete blood panel, but not the other stuff. My doc has been saying "maybe" I ought to be tested for malabsorption in a little while, but his idea of a "wait and see" time span is wayyy longer than mine. :angry:

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Don't forget to have your calcium checked. Maybe I mention it too much on here, but it can be important. The consequences of really low calcium were downright scary for me. Little did we know it was due to Celiac...

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I'm still straddling that fence. Went on the gluten-free diet to feel better (because I'd do anything to feel better!). After two weeks family came into town and then Thanksgiving. Wow. Totally blown away at how much it impacts me now and I never related it to what I was eating. I have anemia and very low on D and calcium. Was low on Bs but was taken off of them in April because the B Rx had raised my levels quite high.

My GI doctor has never communicated with my hematologist and when I called him for my records was told there was no electronic (or physical) record of me!! I don't think he looked for it on the capsule endoscopy. I'm trying to get into see a dietician. It would be nice to have gotten the official dx (diagnosis) but I really can't imagine eating what is poison to my body (and mind) to get one. No one needs to tell me something is DEFINITELY going on between gluten and me!

Before 1960, the way they diagnosed Celiac was to restrict the person to being gluten-free for a few weeks and then reintroduce it. It is unmistakable to me that I am Celiac, gluten-intolerant or whatever anybody wants to call it. It IS.

Still straddling the fence though. Good luck on the journey.

Blessings,

Cali

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    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
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